SURPRISE! Good news!!!!

Great news yesterday!  Shriners took new x-rays of Russell's back, and the rib bump in the front, and he's at 0* curvature and 0* RVAD!! This is amazing.  He hasn't worn either his daytime or nighttime brace for 5 days, so if there was a curve, it would have shown up.  Both braces were too small for him.  He's really grown in the last month.  The doctor looked at the rib bump, which is HARDLY there anymore since we removed the braces, and said it should disappear on its own in the next few months or weeks and HE DOESN'T HAVE TO WEAR A BRACE AT ALL FOR THE NEXT 6 MONTHS!!  Aaaaahhhhh...FREEDOM!


This is such a miracle.  We have been so blessed.  We keep thinking that things couldn't get better, and then they just do.  So many horrible things happen in the world, so many trials for so many people.  So many kids do not recover at all from this syndrome, but he has so far.  I trust in a Heavenly Father who knows the needs of each of His children and He cares for each of us perfectly.  We are each given what we need to be happy in our trials and to learn and become more like Him in this life.  I learn this more deeply as time goes on in my life.   Right now I am so full of gratitude that this is what is right for Russell, and for me.  He can run, jump, play.  His muscles can get stronger.  He can breathe because he has full lung function and his heart works perfectly because it also has the space it needs to grow.  I am so grateful to a loving Heavenly Father for directing us on this path and sending us the doctors Russell has needed to be healthy.  This is amazing and I feel so blessed to look ahead and see that he will have a relatively normal life from here on out.  Even if the scoliosis comes back (which it can) he will have had these crucial years of normal heart and lung development.


We also saw the rehab neuro specialist (Dr. Krensky) who looked at his legs and overall muscle weakness.  She actually specializes in rehab for kids who have used orthotic braces.  She said NO leg braces are needed.  Yea! His toe walking isn't bad enough to need that, thank goodness.  She gave us a lot of advice, some exercises to do with him daily. She gave me a list of things to do, buy, or enroll him in.  It was a TON of stuff.   She seems like a great doctor.  I am most excited about the exercises-I think that will help him the most.  We're also going to get him special shoes.  I love that she was so excited that we can do so much to help him before it gets bad.  So he should never need braces, hopefully.  We follow up with her in July.

update

Life has been so good, and Russell's health issues have been on the back burner as we wait for follow-up appointments in August.  If you've missed us, that's why we haven't written.  It's felt so good to have a break from our every-other-month doctor appointments.  We have had a small hiccup recently.  Not too worrisome, but enough that we have doctor appointments anew in one week. 


Last week at Russell's appointment, the PT and I were looking at Russell's chest and noticed that he has a rib hump in the front.  He's never had this before-his rib hump was in the back when the scoliosis was starting.  I called Shriner's and they are getting us in next week to see the Dr.  They (and I) are suspecting that his nighttime brace may be causing this, so he has not worn his night time brace since then and they are possibly going to fit him for a new one.  I am nervous about getting a new one because of the damage this one did-he also hasn't been sleeping at night and I wonder if this is also caused by the same brace-so I'm going to try to be proactive and discourage it.  Yet, I know the doctors know more about this than I do, so we may come home with one anyway.


The PT has also been getting increasingly concerned about his toe-walking, and thinks he might need leg braces too.  I personally don't see it as that bad, but we're going to a pediatric neuro rehab doctor next week (in Utah too and on the same day) to get his legs looked at.  I'm grateful our PT is so proactive and that she's looking out for him really well, that is one thing I love about her.  However, this time, I'm hoping to find out this was an unnecessary alarm. 

Results of biopsy and LP

We got the rest of the results yesterday from Russell's muscle biopsy and LP.  The LP was to test the neurotransmitters, and it came back as totally normal.  (Yay)  The biopsy was positive for Vasculitis, which is inflammation of the blood vessels.  Vasculitis is just a symptom of whatever it is that he has.  But it helps us to go in a better direction, hopefully.  We'll find out more about this at our appt. with Dr. Swobodo at PCMC in December.  I prayed so hard for this testing to find something, and I'm so grateful that our prayers were answered.  Thank you for all your prayers too.

Nov 7, 2013

Russell and Scott got home late last night from their trip to Utah to have the muscle biopsy and LP done at Shriner's hospital.  He has a huge ace bandage covering the stitches and steri-strips on his left thigh, and just a few tiny needle marks on his back when they did the Lumbar Puncture.  This morning he was really favoring that leg, but the more he walks on it, the better it seems to be.  When he woke up, I found out he'd slid the ace bandage (and the gauze underneath) down his leg, so I could see the incision under the steri-strips.  I'm so so glad he is young enough that he won't remember this! It's a lot bigger incision than I'd thought it would be.  It's 2-3 inches long.  Not that it's huge...it's just that I had something smaller pictured in my mind.  I put the ace bandage back on as quickly as possible.  His leg was swollen and slightly purple around the ankle, but about an hour after I replaced the ace bandage the swelling went down a lot and the color got better too. 

I am so grateful he's doing as well as he is.  He doesn't seem to mind it very much at all.  Kids are so amazing.  He's dealing with it a lot better than I am.

He also met with the orthotics drs and was fitted for a Providence Brace, to wear at night.  They said his EDF brace is going to fit him for a long while still (Scott and I thought he was getting too tall, but they said it's still just fine) so he doesn't actually need a new one of those. 

The most amazing thing is that we finally have a 2nd appt. with the neurologist at Shriner's.  It's been over a year since we've gotten in.  We gave some new information to them on Tuesday, and I guess they now feel like it's important to see him.  Finally.

Now to just wait for the answers that I REALLY hope are forthcoming...

More

I've been thinking about this post for a while.  I know I needed to do it, but sometimes just putting things into words can be painful.

Russell was "phased out" of the Infant Toddler Program because he turned 3 last Saturday.  As part of that "phasing", they did some "exit testing" to see where he's at now.  We got Russell's test results last week.  The numbers are that he is below the 5th percentile in gross motor skills and the 3rd percentile in his fine motor skills.  Fine motor skills are things he does with his hands and fingers (coloring, eating, picking up objects, etc.), and gross motor skills are movements with bigger muscle groups, like walking, jumping, going up and down stairs, kicking a ball, etc.  This is a concern also because he has been in PT for a year and a half now and we have been working on these very things.  He is more behind now than when we started.

This feels a little like a kick to the stomach for me, because it felt like we were on the downhill side of his treatment.  We made it up and over the hill of casting and all that entailed, and even though I knew about the muscle weakness, I really didn't think it was a big deal.   His back is STRAIGHT, is what I kept thinking, nothing else could be that bad to deal with.  I just figured we'd get through this testing, and maybe it would show something, but probably not, and then we'd move on.  I didn't really think about it too much.  But now I am.  Even though he's the same little boy he was before I knew those numbers, it feels like so much has changed.  It has kinda freaked me out.  These things can make me feel like I'm sinking into a pit because I'm so sad about them. But I've been praying about this and I think he's going to be okay.  I think about his future, and it just really feels like he will be able to do stuff like running, being active, playing, going to school.  This gives so much hope which is such a blessing for his future.

We're pretty frustrated with the neurology department at Shriner's hospital.  We've had severe lack of communication from them, they've "lost" Russell twice now, rescheduled without telling us, and we haven't actually "seen" the neurologist in 11 months.  They did videos of Russell in their Gait Lab, watching him do activities and walking, etc. back in August.  Not one person there has watched the videos, including the neurologist, still.  So we're going to try seeing some different neurologists, one down at PCMC and one here in IF, and get some new opinions.  Our pediatrician did some blood work on Russell today, and she's recommending genetic testing to the neurologist we're going to see.  It would really help to know what we're dealing with.  Who knows if we'll be able to figure it out (there are too many different types of myopathies to test for them all), but that seems like a good place to start.

Other than that, we're just going to continue with the pool therapy, physical therapy, and the tests already scheduled at Shriner's in couple of weeks.  I know Russell is in his Heavenly Father's hands, and I need to trust in that.  I need to let go of what I had pictured for him and trust that Heavenly Father's plan is so perfect it will be better than what I thought.  I don't know if I said that right, if it conveys exactly what I feel, but I know that this is the way Russell's life is supposed to go.  This is what needs to happen for him.  And for our family.  He is so young, he won't remember most of this stuff, but the rest of us will.  All of this affects the rest of us.  His siblings all worry about him.  They are protective of him and so proud of him when we're out with other people.  He's a pretty lucky boy.

MRI results and new brace coming!

We finally heard back from Shriner's about Russell's MRI, and everything looks normal.  Yea! Not really a surprise, but really good to hear.  We can all breath a sigh of relief now.

Also, Russell's brace is getting too small for him, so we are getting new x-rays and two new braces for him.  One will be like the one he has now, just bigger, and then another one that he will wear at night.  It's a brace that will stretch his back and spine in the opposite direction as the curve.  Sounds painful to me, so I'm expecting some rough nights at first with this.  I'm glad they're doing this for him.  During physical therapy, we've notice that he's extremely flexible in the same direction as his curve, but is very stiff leaning the opposite way.  We're getting fitted for these two braces on Nov. 5.  On that same day they are going to do a muscle biopsy and a lumbar puncture (spinal tap).  This is just continued testing on his muscles. 

pictures of brace

Finally, pictures of Russell and his brace!  First, here is a picture of Russell in his brace, with his shirt on. You can't even tell hardly that he is wearing a brace! This is nice.  People don't stare at him as much anymore.  I really appreciate that.

 

 So there is the same mushroom-shaped window in the front.  Scott picked out the camouflage color.  You'll notice there are no over-the-shoulder straps.

 

 Here, you can see the three Velcro pieces that hold it together tightly in the back.  There are lines on the Velcro that help us know how tight it needs to be.

In this picture, you can kind of see the indentation just above his hips.  That helps hold his pants up, as in the picture below.  The cast was the same in that way.  The snake was his favorite toy that day.